Since my December 2, 2005 Non-Hodgkin Lymphoma diagnosis, I've been on a slow-motion journey of survivorship. Chemo wiped out my aggressive disease in May, 2006, but an indolent variety is still lurking. I had my thyroid removed due to papillary thyroid cancer in 2011, and was diagnosed with recurrent thyroid cancer in 2017. Join me for a survivor's reflections on life, death, faith, politics, the Bible and everything else. DISCLAIMER: I’m not a doctor, so don't look here for medical advice.

Wednesday, September 28, 2011

Alarming statistics this week from the world of health-care financing: a new study by the non-profit Kaiser Family Foundation has revealed that the cost of medical insurance has been rising at its fastest rate in recent memory. According to a New York Times article on the study, “the average annual premium for family coverage through an employer reached $15,073 in 2011, an increase of 9 percent over the previous year.”

In this economy? With so many people unemployed or underemployed?

This rise is, of course, much higher than the inflation rate. That’s nothing new. The cost of health care has been rising faster than inflation for quite some time now. The Times article continues: “Over all, the cost of family coverage has about doubled since 2001, when premiums averaged $7,061, compared with a 34 percent gain in wages over the same period.”

Did you catch that? Over the past decade, the cost of medical insurance has grown twice as high, but the average gain in wages is only 34%. That’s a huge discrepancy. Lots of people have been forced to let their medical insurance go, but those employees who have managed to hang onto it have surely had to make savage cuts in the family budget in order to do so.

Remember, those statistics apply to group-rate insurance provided through employers. Self-employed people, who lack the negotiating clout big corporations have, are in an even worse position.

Now, hold that thought, and recall that incident from the September 12 Republican Presidential candidates’ debate, when the moderator, Wolf Blitzer, posed a case-study question to libertarian Ron Paul. What if a healthy 30-year-old decides he can’t afford health-insurance premiums, falls ill, and goes into a coma? Who’s going to pay for his care?

Paul’s answer was, it’s not the government’s job. That approach he branded “welfarism and socialism.” To the delight – and applause – of his fans, he went on: “That’s what freedom is all about, taking your own risks.”

“But Congressman,” Blitzer probed further, “are you saying that society should just let him die?”

The TV soundtrack records several loud voices in the audience shouting, “Yes!”

Paul may have been energized by the cheers, but he wasn’t so stupid as to echo their sentiment. “No,” he replied. “I practiced medicine before we had Medicaid, in the early 1960s, when I got out of medical school. I practiced at Santa Rosa Hospital in San Antonio, and the churches took care of them. We never turned anybody away from the hospitals.”

More applause.

“And we’ve given up on this whole concept that we might take care of ourselves and assume responsibility for ourselves. Our neighbors, our friends, our churches would do it. This whole idea, that’s the reason the cost is so high. The cost is so high because they dump it on the government, it becomes a bureaucracy.”

Jon Stewart, in his September 26 Daily Show interview with Ron Paul, lauded him as one of the few Presidential candidates not guilty of flip-flopping, who’s been utterly consistent over time. That may be so, but Mr. Paul’s remarks reveal he’s also living in some kind of alternative universe and is utterly out of touch with reality. He expects the churches to pick up the slack for people like the hypothetical uninsured 30-year-old in a coma? The churches? Why, the entire annual budget of the 500-member church I serve would only cover a few months of intensive care for that comatose 30-year-old – and that would only be possible if the church would lay off all its ministers and other staff, cease giving to mission causes, disconnect the utilities and close its doors.

Mr. Paul – himself a medical doctor – is living in an imaginary world, in which medical care is delivered by the beloved family doctor who comes to visit patients in their homes, accurately diagnoses their ailments solely by poking and prodding and without resorting to diagnostic scans, cheerfully treats the poor in exchange for in-kind gifts of agricultural produce and livestock, and somehow manages to remain master of the entire vast library of medical literature.

Surely there’s a lot of waste and fraud in the medical-insurance world – including the insurance companies themselves, who do nothing for patient care but push paper and skim off profits for their shareholders – but there are some good reasons why the cost of insurance has risen so much. It’s because the actual cost of medical care has risen, as well. High-tech scans like the ones I get every few months are wonderful technologies, but they cost lots of money. Hospitals pay millions for those machines, then spend years paying them off. New-generation drugs, like the Rituxan that may have saved my life, do amazing things, but they cost millions to research and produce – and not all of those million-dollar babies make it through the clinical-trial process that declares them safe and effective to use.

We’re living in a different world than the world of Mr. Paul’s childhood, of his homespun stories of working in the local pharmacy as a kid, going off to medical school and hanging out his M.D.’s shingle. Maybe back then, on those rare occasions when kindly old Dr. Feelgood had to refer a patient to the university medical center, the churches of the town could get together and hold bake sales to help pay their neighbor’s bills. But those days are long gone.

A retired friend and former colleague of mine, Gene Straatmeyer, addresses this topic in a recent blog posting. He reminisces about the old days growing up in the upper-Midwest farm country,
about how he went largely without medical treatment as a kid despite suffering from asthma, how both his father and his father-in-law dropped dead from heart attacks at relatively young ages. “I remember,” he continues, “when an appendectomy was major surgery. I remember a cousin whose limbs were gone by his early 30's from diabetes. I remember when 70 was a ripe old age....”

“Right now I feel helpless,” Gene admits, “in the face of what may be coming. So do many others. I certainly hope and pray my grandchildren and great grandchildren aren’t tossed back to the time of my childhood because medical care will not be affordable for them or their children.”

Yet, that’s precisely what Mr. Paul, and many politicians like him, are calling for. When leaders like him admit that some sick people are just going to have to die because they can’t afford medical insurance, and debate audiences gleefully applaud such a callous remark, it raises questions of morality that have so far been left out of the contentious national debate.

We’ve made ourselves such individualists in recent decades, here in America, that we’re losing the last vestiges of the social contract, discarding any idea at all that we have a corporate responsibility to care for one another. That's not "welfarism or socialism." It's simple Americanism, merely the 21st-century incarnation of the community values that Mr. Paul and his ilk pretend to admire, even as they're trampling all over them. The very doctrine of individualism – that seems to have become an article of faith for some people – is elevated to such a height in their minds that it trumps all other questions of morality, including even the explicit teachings of Jesus, the prophets of Israel and other great religious leaders, who declare over and over again that caring for the poor is part of our job as a society.

Mr. Paul’s response is to throw such questions of morality back on the churches, saying in effect, “You think we have a community responsibility to care for the poor here in this land? OK, if you feel that way, then you do it!”

Would that we could. But medical care just isn’t that inexpensive anymore, nor is the community’s financial support of the churches strong enough to make that happen.

Guess that comatose 30-year-old’s ventilator has just gotta be unplugged. Hard luck, fella. You gambled and lost.

If it is unplugged, it will be Mr. Paul and his immoral admirers who will be left holding the cord.

Universal, government-provided health may not be the easiest option before us. Yet, the more I hear of this situation, the more I become convinced that it’s the only moral option.

Tuesday, September 27, 2011

A little op-ed article in our local newspaper was written by an artist, Shari Epstein, who happens to be a breast-cancer survivor. Shari reports how some of the paintings she created during her chemotherapy and subsequent radiation treatments took on a rather dark and ominous tone.

She also observes how her experience as a cancer survivor has changed the way she looks at time:

“I am a survivor because having cancer reminds us just how fragile our lives are. For me, it changed the immediacy of wanting to accomplish my goals. It changed my appreciation of the joys in my life. It left me intolerant of wasting my time. Cancer makes time a new precious commodity. Enjoy it, embrace it and hope you have lots of it.”

I can relate to what Shari says. Since getting cancer, I’ve probably been working harder than ever before, particularly on writing projects. I have more of an awareness, now, that my time on this earth is limited. I also feel some of that same impatience she reports with experiences that seem to be time-wasters.

I’m more concerned than before with leaving my mark on the world, with accomplishing some things that will set me apart from the crowd. Previously, I would have characterized some of those daydreams as hopes or desires. Now, they’re closer to goals.

It’s paradoxical that I’m doing this, because of another learning I’ve had as a result of my cancer experience: that cancer just is, that it falls upon certain lives like the proverbial rain that falls on the just and the unjust. If the R-CHOP had made no dent in my lymphoma, if it had snatched me from this world at age 50, I wouldn’t have blamed myself for that. I might have been angry, or frustrated, or sad. But, I wouldn’t have said it was my fault.

Now, with my lazy, indolent cancer hanging back and not doing much of anything for the past six years, I’m inclined to blame myself for any aspect of my life over which I do have control, but that I haven’t turned to the goal of accomplishing something noteworthy.

Some cancer survivors speak of how their experience with the disease has taught them to stop and smell the flowers. Not me. I’m not much interested in doing that unless I can pick and press some of the flowers and use them to make something worthwhile.

Tuesday, September 20, 2011

The other day I looked at the calendar and said, “Hey, wasn’t I supposed to hear back from Dr. Fish’s office in New York about scheduling my radioactive iodine treatment?” They’d been waiting on news about the availability of Thyrogen, the medication I need to be given just before the treatment. The estimate at the time was that the drug would be available to them in mid- to late-August.

I sent them an email (that’s something patients can do with Memorial Sloan-Kettering doctors, through a special patient website they’ve got set up – unlike most other doctors’ offices, that are still hopelessly mired in the age of the telephone). This morning I checked back on the site, and here’s the reply:

“At this time Thyrogen is not available for the treatment. We do expect an update soon. As soon as we receive Thyrogen we will contact you regarding scheduling.”

Doesn’t tell me much, but at least it tells me that the worldwide shortage of the drug is continuing.

Patents are supposed to protect the intellectual-property rights of inventors, I know, and in that respect they’re a very good thing. Yet, when the invention in question is a drug, and there’s only one company worldwide that’s licensed to manufacture it, I think the company has a special responsibility to be sure the drug remains available. I wonder, is there any provision in the law for taking a drug patent away from a company that fails in such a massive way, so other companies can step in and make sure the supply continues?

Dr. Fish told me the manufacturing process for Thyrogen takes three months. It’s been more than three months, now, since the shortage began. Makes me wonder what’s going on with these people.

About Me

I am Pastor of the Point Pleasant Presbyterian Church, a 450-member congregation in Point Pleasant Beach, New Jersey. I also serve as Stated Clerk of the Presbytery of Monmouth - a regional governing body composed of 45 Presbyterian Church (U.S.A.) congregations in central New Jersey. From time to time I teach Presbyterian Polity at Princeton Theological Seminary and Presbyterian Studies at New Brunswick Theological Seminary. I am married to the Rev. Claire Pula, Director of the Bereavement Program, Meridian Hospice. We have two children: Benjamin, a singer-songwriter, and Ania, an artist. I write two blogs: "A Pastor's Cancer Diary," in which I reflect on my ongoing experience as a cancer survivor (Non-Hodgkin Lymphoma, also Thyroid) and "Monmouth Presbytery Clerks' Corner," a place for Clerks of Session and other interested folks with an interest in Presbyterian polity (church government) to gather online.